Our first neurologist told me I would have to be as tough as nails. He explained that people with Parkinson’s give up easily—partly because Parkinson’s creates a depressed state of mind and partly because Parkinson’s robs the person with it of energy. It’s easier to sit and let the world pass by than to try and battle the discombobulating, shaking or hammer-shot reflexes that throw each one with PD off balance.
In Oprah Winfrey’s recent interview with Michael J. Fox on television, she said a caregiver had to be a rock. He corrected her and explained that his wife Tracey Pollan was very fluid. She constantly adjusted to his changes and needs. She was not like a rock at all.
I think Michael and Tracey are a unique couple, even if he never developed Parkinson’s. Although I can picture him arguing that having Parkinson’s changed him because he came to appreciate his family’s love and to live each moment with them to its fullest, I believe his life with Tracey would still have evolved into something special for them because of their mutual interests, talents, styles and personalities.
Had he not had Parkinson’s, he speculates his job would have consumed him and he would have missed out on the time he’s been given with his family. Possibly. When we’re healthy, we take it for granted. We forge ahead, sometimes selfishly. But no one goes through life untested. If his disease didn’t challenge their relationship, something else would have.
As couples, how we evolve depends on our inner spirit, on our approach to problem-solving, on our backgrounds, on our commitment to each other and on our faith.
When Michael first learned he had the disease, he hid it from his co-workers and the public. He went through a long period of denial and often drank himself into oblivion, until he faced the disease and acknowledged it. This struggle is a personal experience for each individual diagnosed with the disease. But, once he went through that phase, he formed his own philosophy for handling it, and he and Tracey’s deep love influenced their way of communicating with each other. As a result, they grew more deeply in love. Oprah calls their relationship a “spiritual union.”
They are an inspirational example, but what has worked for them, might not work for you, or for Wally and me. And as I talk about Wally and me, our way of handling Parkinson’s will not be yours. Every situation is as unique as each individual’s set of symptoms. Not all couples grow closer together on this PD journey. Sometimes the stress kills caregivers before their PD partners. And though we make the promise, “you will never go into a home” to our loved one with good intentions, we cannot always keep that promise.
One approach is common to all, however. If you pity the person you are caring for with Parkinson’s, you enable his or her self-pity. How can I say that? Why wouldn’t you feel sorry for someone with PD? It’s a no-fun disease.
Pity is like pride. It brings out the worst in us, instead of the best.
I’ve seen well-meaning people change the way they see the person with PD. They feel sorry for them and start doing things for them instead of letting them carry on in their own way at their own rate. In other words, they pamper them. Sometimes we pamper because we feel guilty that our loved one has the disease and we don’t. But, as soon as we start doing things to make it easier on those with PD, we rob them of their independence and dignity. There is such a thing as doing too much or being too helpful.
When Wally has been down on himself or indulging in what I call a self-pity party, I tell him, “I am sorry you have Parkinson’s, but I am not sorry for you. You are not my child. You are my husband. I am not dressing you. I am not feeding you. You will do everything for yourself. It will just take you longer. You will retain your independence for as long as you possibly can. Is that understood?”
He nods. And then I hug him. “I love you, you know. The neurologist said I would have to kick you in the pants now and again, but don’t make me do it too often.”